Need Help

[Heather1]

Hello,

I was told I had IBS and was sick for 13 years. In 2007 I had the celiac antibody test and tested positive. My number was three times higher than normal. I went on a gluten free diet. Many weeks later I went thru an endoscopy but the doctor failed to take enough samples and didn't tell the lab I was a celiac. The test came back negative. I was told by another doctor that I was a celiac and the endoscopy wasn't peformed right.

Now 2 1/2 years later and feeling amazing, I am seeing another doctor. Because of the screwed up endoscopy he decided to run a genetic test. I came back negative. But I have done research and according to all my sources the genetic test is not reliable because they don't usually run a full panel. My doctor of course insisted it was run properly and told me it was highly unlikely I was a celiac.

I don't know what to think....am I a celiac or not? 13 years of being sick, testing positive for the disease, going on a diet that changed my life, now this doc is telling me highly unlikely. Has anyone else had this issue?

Heather

[Evie4]

I think you'll find a lot of people with similar stories on this board. I'm not one because I read a lot of those stories and decided after 15+ years of IBS and a positive response to a gluten free diet, that I'd just pay for my own gene and antibody tests. I understand that a postive antibody test (the type typically performed through the doctor) is conclusive--I'm sure someone here will comment on that and correct me if I'm wrong.

There is a good article on the main page about DNA testing for celiac disease. I think you really have to know what they tested for. I purchased a test by Kimball that included the alpha and beta sub-units. Some ( I understand most) labs tests for beta only as it is less expensive. I wanted to make sure both were checked, and as it turns out I have an DQ2 alpha allele. So a lab that checks for beta only would send the test back as negative.

I also am testing with Enterolab. I'm doing all they offer to get the most info possible. Apparently they check some other genetic markers as well.

I've been sick too long and I want some answers...not just opinions. I want to be well. I want my life back. So, I guess it goes without saying that I don't care what the doctors say or think I've gone gluten free, I feel better and I can't rule celiac out now--so I'm just going to stay gluten free!